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Jewish Genetic Testing for Rare Disorders

Some rare diseases more common in Ashkenazi Jews

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Updated March 25, 2013

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You may have heard of these rare disorders: Tay-Sachs disease, Canavan disease, Fanconi anemia, Neimann-Pick disease, and Gaucher disease. You may also know that they are serious, often fatal genetic diseases. What you may not know is that these diseases all occur more frequently in the Ashkenazi Jewish population (Jews descended from ancestors in Eastern and Central Europe) than in the general population. These diseases are autosomal recessive genetic disorders, which means that both the mother and the father have to have the gene for the disease in order for their child to have the disease.

Dor Yeshorim premarital genetic testing
This ethnic group was being severely affected by its high rates of occurrence of these diseases until the ability to do genetic testing was developed in the 1970's. Rabbi Josef Ekstein, who had four of his own children die of Tay-Sachs disease, realized his community needed to take advantage of the testing available and founded Dor Yeshorim in the early 1980's.

Hebrew for "generation of the righteous," Dor Yeshorim is a premarital genetic testing program for Ashkenazi Jews in Israel and the U.S. This service is usually used by Orthodox Jewish couples whose marriages have been arranged by their families and the community's religious leader (rabbi). The prospective partners are tested for carrier status for Tay-Sachs disease, cystic fibrosis, Canavan disease, familial dysautonomia, Fanconi anemia type C, Bloom syndrome, Gaucher disease type I, Mucolipidosis type IV, and Glycogen storage disorder type II (Sephardic). The program costs about $200, and results typically take between two to three weeks.

Individuals are tested anonymously, using a code. The rabbi compares the results by code, and if both people are carriers for the same disorder, the families are informed that the marriage may not take place. If only one person is a carrier, then the marriage can go forward, since the couple cannot have a child with the disease. Which person is a carrier is not divulged, to avoid stigmatization.

Ethical issues
Some geneticists and medical ethicists question the ethics of a program that supports arranged marriages in which the couple have no choice of partners and which also conceals information about carrier status if only one partner is a carrier. In a newspaper article, Rabbi Moshe D. Tendler, a medical ethicist at Yeshiva University in New York, stated, "You violate my privacy if you know more about me than I know about myself."

Others, though, would argue that the success of Dor Yeshorim outweighs any negative aspects. The program has prevented the heartbreak of the birth of a child with a serious genetic disorder for many couples in a religious group that forbids abortion. The rate of Tay-Sachs disease in the Ashkenazi Jewish population, for example, now has fallen below the rate of the general population.

Contact Dor Yeshorim
The Dor Yeshorim Headquarters is located in Brooklyn, New York, and can be reached at 718-384-6060.

Jewish family services
In the United States and Canada, many Jewish family service organizations offer genetic screening for rare disorders in the Ashkenazi Jewish population. Any adult may be tested, and it is free, although those who can afford it are requested to make a donation. Unlike Dor Yeshorim, participants will receive a letter with the test results within three weeks of the screening. With permission, individuals who test positive will receive a phone call from a genetic counselor to discuss the results.

Contact a Jewish family service organization in your area
If you would like to contact a Jewish family service organization, the Assocation of Jewish Family & Children's Agencies maintains a list of organizations offering genetic screening in the U.S. and Canada (choose "Genetic Screening" from the drop-down menu).

Sources
- Brave, Ralph. Test results: Jewish Family Service is launching a genetic screening program for the Baltimore community. Baltimore Jewish Times, November 10, 2000.
- Chicago Center for Jewish Genetic Disorders. Dor Yeshorim
- Grady, Denise. Gene identified as major cause of deafness in Ashkenazi Jews. The New York Times, November 19, 1998.
- Hesman, Tina. Genetic tests are raising privacy issues. St. Louis Post-Dispatch, July 2, 2000.
- Wertz, Dorothy. Should geneticists cooperate with premarital testing before arranged marriages? The case of Dor Yeshorim. The GeneLetter by GeneSage, August 1, 1997.

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